My doctor put me on IV doxycyline in September 2012 for Lyme disease. I had originally been on oral doxycyline and was responding to that at 300mg per day, but was having severe GI issues, so he switched me to IV.
The IV dose he put me on was 100mg. He told me that this dose was equivalent to 650mg of oral doxycycline.
I was on IV doxy for 21 months, and was not getting better. Finally, last month, I got sepsis, and ended up having my line pulled out. Getting sepsis was awful, but that is another story.
I have not been on antibiotics since then, as I had to be on extended antibiotics for the sepsis, and then it was a 3 week wait to see my doctor. I only saw him for the first time after being in hospital, yesterday.
Because I have been struggling with not getting well for some time, I went to see another very well known LLMD for a second opinion today. He asked me why my doctor did not give me a higher dose of doxycycline.
I told him that every time I went higher on the IV dose I would get severe ringing in the ears and would have to stop. This doctor told me that 100mg of IV doxycycline was equal to 100mg of oral doxycycline and because it was such a low dose, he did not think it would have helped me.
I called the infusion pharmacy I had been using to confirm the dosing equivalents. They told me the same thing - that 100mg IV doxy was the same as 100mg or oral doxy. After that, I went into shock - shock that I was on IV for 21 months at a dose that would not get me well, and shocked that my treating doctor had told me a totally different story about the dosing.
The new doctor I saw today also told me that pulsing Tindamax three days a week would not be helpful, which is what my current doctor does. He said that it takes about 2 weeks of a cyst buster to start activating cysts so he does not give anything less than two weeks at a time.
My current doctor has just prescribed me Bicillin shots (once a week for now) with Tindamax 4 days a week, and malarone 3 days a week. The new LLMD told me that Bicillin shots should never be combined with a cyst buster or other oral antibiotics for Lyme, because Bicillin is effective due to its very low dose which keeps the antibiotic under the radar and therefore prevents Lyme from going into cystic form and so kills Lyme more effectively.
He said that he has seen treatment failures when Bicillin is combined with other Lyme killing drugs. My current LLMD feels totally differently and said I HAVE to take Tindamax with the Bicillin or else it will drive the Lyme into cystic form. A totally different opinion!
My current LLMD interestingly, however, does not believe that you need a cyst buster with doxycycline and so I have had very little cyst busting treatment overall in my treatment.
Since I came off all my antibiotics, I have relapsed severely. I am struggling to function with all my neuro symptoms and my pain levels. On top of that, I am in the midst of trying to sell my house and will be moving in a couple of months, so this has come at a very bad time.
I am now feeling completely overwhelmed. Both my children and I all go to the same LLMD. My oldest son is on IV treatment with him for a lesion in his brain.
With the new information I have from the second opinion, I don't know what to do. I feel devastated that my current doctor did not know that he was only giving me the equivalent of 100mg oral doxycycline whilst I was on IV, and that if I could not tolerate a higher dose, why he just did not go back to treating me with orals that I did tolerate.
I feel like so much time and money has been wasted and my first reaction is just to leave him and get treatment from another doctor. However it is not so simple.
I cannot walk out from treatment unless I take both my kids with me, who are actually doing well on their treatment. It would be very awkward to leave him, but have to see him with my two kids. After working with my current doctor for three years, he would question why I had left him but still felt he was ok for him to treat my kids.
I have seen him get upset before in my appointments when I have questioned my treatment, and I don't want him to get angry at me if I leave him but let him treat my kids. Financially its going to be very difficult if I go to a new doctor as they are all more expensive, and I would have to find another doctor who prescribes IV for my son, which is not so easy.
I am so confused and just don't know what to do! I also feel so depressed that I was also treated inadequately for so long, and now have to start from the beginning again. I don't trust my doctor any more, but then, I don't know if what the other doctor is saying is true either?
Deep in my heart, there is a part of me that believes I will get better as I was improving at one point, and then there is another part of me that worries that I will never get well based on my current experience. My emotions are all over the place!
My youngest son has improved on our current doctor's treatment, and so have other people I know who have gone to see him. I have had lyme though for years - over 10 years, so I know I am a tougher case, but I don't want to give up hope.
Perhaps someone could comment on the use of cyst busters and how they have been prescribed them, treatment with Bicillin shots with or without the use of other antibiotics, and maybe give me some direction. Its so hard to know what to believe anymore. I am tired, unwell, and need to move forward, but just don't know if I should do it with my current doctor or find a new one.
If I need to find a new one, I don't even know if I should go to the doctor I saw today for a second opinion, or seek out yet another opinion. The doctor I saw today has lots of good reviews, but I have never spoken to anyone who has seen him to get feedback about him.
I hope someone will be able to help me. Thank you for listening, I appreciate it and I am sorry if this is confusing - I just feel so upset right now.
Posts: 187 | From Connecticut | Registered: Jun 2013
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desertwind
Frequent Contributor (1K+ posts)
Member # 25256
posted
Okay, here is my take. There is no room for ego in my health care. I would never stay with a doctor whose treatment I did not trust or because I feared his/her reaction to my leaving.
I understand leaving may feel uncomfortable due to your children being treated by this llmd, however, if your kids are getting better under his care then that is all that matters. He may be good for them but not you. You cannot stay with a doctor that you do not trust! Do you trust him w/ your children's care? To mess up your dosage like that for almost 2 years.....erggg....
The dosing screw up would be reason enough for me to leave. Plus he let you go for 21 months w/o any progress? Did he not switch up your treatment plan?
When I did IV Doxy I am pretty sure it was 300 mg.s or higher. I too went septic due to picc line infection and had to have the line removed. That was back in 2005.
My llmd (Dr. H.) pulses my Tindamax 3 days on/ four days off.
I hope you can get some clarity on this and make the best decision for you. DW
Posts: 1671 | From Tick Infested New Jersey | Registered: Apr 2010
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posted
Just say you've decided to go off meds for now. And when you see him say you feel better. Move on to new llmd.
Posts: 342 | From Philadelphia | Registered: Dec 2011
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
"My current doctor has just prescribed me Bicillin shots (once a week for now) with Tindamax 4 days a week, and malarone 3 days a week."
I'm on these but at a much higher dose along with some other meds. I feel it's helping me progress, but I need to be on the higher dosages.
Going 21 months with little progress doesn't sound good. My doctor changes things if there isn't any progress.
Posts: 2839 | From California | Registered: Jul 2012
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
Oh my gosh! That is so sad! I feel so badly for you. 21 months no progress at a ridiculously low dose with NO cyst buster.
That is awful!
My doc also prescribes tinidazole, 2 weeks on, 2 weeks off.
"The dosing screw up would be reason enough for me to leave. Plus he let you go for 21 months w/o any progress? Did he not switch up your treatment plan?"
I agree with the above. My treatment plan is switched every two to three months. The thing I was on the longest was IV rocephin, and the orals were switched often, and dosages changed depending on the med combo.
I agree with jessiep too.
Find an LLMD quick as you can (you can't be a good mom if you are backsliding). And doesn't matter what you tell that doc. Your health is priority #1.
Even a "Gosh doc, you have worked such wonders with my kids. I so appreciate it. You have a real knack for helping children with lyme."
And just leave it at that. It's the truth, if he is helping your kids.
You don't need to explain why you don't go to him anymore.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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Fire your current doc. The 2nd opinion doc knows much more than the other one.
Hubby actually took tindamax or flagyl continuously for a couple of years. But that is after no cyst busters for his first 9 or 10 years of treatment. He had to start with low doses as he ended up in the ER when he started both the tindamax and the flagyl. He did tindamax first for quite a few months before switching to flagyl. Flagyl is the stronger of the two.
The first doc who prescribed the tindamax prescribed it by itself - dropped the minocycline hubby had been on for over a year. Big mistake as the doc later admitted that it was not really known if cystbusters just open up the cyst or if they actually kill the lyme. We later left that doc as they would not prescribe IV or high enough doses of meds to really help hubby. Stayed with the doc for about 3 years which was at least a year too long.
Generally if you do not improve significantly with a doc within a year then a 2nd opinion is needed in my opinion.
I do not understand why the 2nd opinion doc did not suggest rocephin instead of doxy - do not think rocephin has nearly as many ear problems.
As for the malarone - again I think people do better on that daily. Hubby could tell a difference between 4 tablets daily and 6 tablets daily. He was on that med for 14 months continuously with other babesia meds as well.
Hubby never did the bicillin shots.
As for your son = don't know his age, but kids often respond to treatment quicker than adults so you can't really compare your treatment to his.
This is not medical advice, just my opinion based on hubby's experiences.
Good luck.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
I'm so sorry to hear this but that doctor really mishandled your treatment. A quick glance at Dr. B.'s guidelines will tell you that IV at 100mg is like a drop in the bucket.
Your new LLMD sounds much more knowledgable. I'm glad you children are getting better but if it were me I would not even want my children treated by his doctor. He doesn't appear to know what he is doing, I'd find it hard to trust his judgement relating to treating my children at this point. It's possible your children would do even better with a new LLMD. Consider having them treated by the new LLMD. Then you won't be in an awkward situation.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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posted
Greta, you are right that I don't need to explain myself if I don't go to see him any more. It is just hard for me because I have seen him get angry when I have asked him certain things, or questioned his treatment. I am just afraid of a negative reaction from him, even though I should not have to be.
There are other things which I am unhappy about too - my one son is on the autism spectrum and my current doctor doesn't understand that, and he poo-pooed his neuro-psychological evaluation report saying he does not believe in stuff like this. I was hoping he would find it helpful as the neuropsychologist showed that my son still has symptoms of lyme encephalopathy.
He also just does not get how my continued illness and taking care of two sick kids, really gets me down. When I started crying during my appointment yesterday, he asked me if there was anything that made me happy as if I was just a miserable person in general.
That really felt like a slap in the face. I told him that my pain really prevents me from doing all the things I love, but he still was not very sympathetic.
One of the things that is holding me back from going to another doctor is that he treats my thyroid and pretty much functions like my primary care doctor right now as I don't have one. If I went to a regular endocrinologist, they would probably not treat my thyroid because my TSH is normal but my T3 and T4 are low.
I think my gut instinct is telling me I should go, but I am nervous to try another doctor. This new LLMD said that most of his patients get well and are off antibiotics in 18 months. I don't know if he treats for longer and if I wasn't well under his care in that time frame, if he would continue to treat me.
If anyone has any feedback on Dr P in CT I would appreciate that.
Thanks to all have responded so far. I appreciate the support and feedback and will take into consideration all you have shared.
Posts: 187 | From Connecticut | Registered: Jun 2013
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
You have received excellent, excellent feedback here---
I have a few online Mom friends who are using a pediatric LLMD in CT and they are very happy (one has her child recovered)
I hear this Dr. has a long wait list tho, and I don't know more info specifically- there are a few choices for kids in CT.
I do understand how you feel. My child w/ Lyme and I cannot travel far distances, and after years of ungodly stress and untold financial output trying to get answers, when there finally is a Lyme doc available,
it is very scary to think that door may be shut- and we would be adrift again. I totally get that- but just today, I found a new speciality treating Dr. for my dd, all day driving, $,
but I tell you what. When you find the right Dr. my God. I was blown away today. And now I have to switch her, too.
You can do this. I agree, just don't make your next appt., don't bring it up, and if you are asked if your kids are there, tell him you are taking a break from treatment, financial reasons, you need a break, whatever.
I would go w/ your 2nd opinion.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Good grief! I don't know how I could trust your current doctor after this if I were you. That is such a monumental mistake and for so long??!!
Dr. P is really good!! He's very knowledgeable. Go with him! Does he treat kids? I would think so.
Don't look back (easier said than done to not be upset about it). I would be livid if I were you.
You need to take care of you and your kids, and not your doctor!
Posts: 3771 | From around | Registered: Mar 2008
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
Any good Lyme doctor treats the whole person, including the thyroid because it's all tied together.
Please get a second opinion (or 3rd or 4th or 5th). Keep going until you find someone you like.
You don't need an abusive, dismissive doctor who isn't even giving you the right dosages. Life's too short.
I had to stop seeing a doctor who misdiagnosed my EM rash as a spider doc. I had been working with her for 10 years!
No need for drama, just don't make any other appointments and have the new office request your records or bring your lab tests.
Always get a copy of your lab tests.
Good luck and you don't need this grief.
Posts: 2839 | From California | Registered: Jul 2012
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dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
"Any good Lyme doctor treats the whole person, including the thyroid because it's all tied together." I agree!
Are there any support groups in your area where you could gather information on doctors? Sometimes you hear of very good, supportive doctors (integrative physicians, naturopaths, NP's...) to compliment the care your LLMD provides.
I am so sorry for what you have been through. I could not stay with your current LLMD given the big mistake he made and the way he reacts to your questioning things. With this disease, you need to be a team with your doc because it affects everyone so differently.
But I understand the financial piece and how difficult it would be to make a change for everyone. There are some very good suggestions here. My heart goes out to you. Posts: 2386 | From New England | Registered: Aug 2011
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posted
"I do not understand why the 2nd opinion doc did not suggest rocephin instead of doxy - do not think rocephin has nearly as many ear problems."
Bea, I am allergic to cephalosporins, so that is why he never prescribed them for me.
"You need to take care of you and your kids, and not your doctor!"
Rumigirl, you are right. I tend to try and see the good in people and stick out negative situations for far longer then I should. Thank you for pointing this out to me.
Dpei, unfortunately with regards to finding a support group, the nearest one is at least 1.5 hours away, so that has been difficult for me. But I think I am going to make an effort to find one of those and attend one of them to get more feedback of good doctors.
Posts: 187 | From Connecticut | Registered: Jun 2013
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
Oceangirl:
Aww man! Sorry to hear that doc is poo pooing the neuro testing of your child. That should be another red flag.
It is easy for me to offer advice, as I am not in your shoes, but I would fire that doc completely and take you and your kids to another doc ASAP.
A good doc uses every test, and response to every treatment plan like clues. They gather up clues from everything to help tailor and tweak a treatment plan to be effective and safe.
My LL treats my thyroid also. A good LL will treat the entire body.
From what you say, your current doc sounds like he dislikes treating you, and will probably be happy if you go somewhere else. (If that helps your guilt). My goodness, who says, "Does anything make you happy?" that's awful.
It should have been, "it's so hard to be a mom for sick kids, when you are sick yourself. But you are doing the best you can." or some similar comment.
But we also have to be careful on this forum not to post too many disparaging remarks or experiences that could identify an LL.
Other patient's lives are on the line if the doc stops treating because of political pressure.
Not trying to be mother hen here, just reminding this is an open forum to the aholes that persecute docs also.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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I understand. I think I have said enough. And I think I am entirely convinced now to leave and seek treatment elsewhere.
I think you are so right about the fact that I think he dislikes treating me. You have excellent insight. Moving forward with a new doc gives me new hope as well, which I really need.
Thank you so much for your support and for everyone else's support.
Posts: 187 | From Connecticut | Registered: Jun 2013
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Dogsandcats
Frequent Contributor (1K+ posts)
Member # 28544
posted
Oceangirl-
My heart goes out to you. It is far more difficult when illness involves our children.
Trust your instincts, you will know.
I had one dr ask how I was ( he was treating my son for a non Lyme issue, who never slept thru the nite til 10) and he finishes the question with - "and don't say you are tired."
A hug for you. You sound like a really good mom. Just trust your gut.
-------------------- God will prepare everything for our perfect happiness in heaven, and if it takes my dog being there, I believe he'll be there.
Billy Graham Posts: 1967 | From California | Registered: Oct 2010
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posted
I have been through many dr many times in my life. Someone once told me that when dealing with dr remember you are the boss and they are your employee.
I have been to dr. That have gotten upset when questioned either a. I would let them know there was no need to get upset. Or b. walk out and not return.
I know your children are involved and that is hard but another llmd may treat them the same or have a better treatment plan.
Good luck I am praying for the right decision to come.
Posts: 13 | From North Carolina | Registered: Jun 2014
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posted
I have been through many dr many times in my life. Someone once told me that when dealing with dr remember you are the boss and they are your employee.
I have been to dr. That have gotten upset when questioned either a. I would let them know there was no need to get upset. Or b. walk out and not return.
I know your children are involved and that is hard but another llmd may treat them the same or have a better treatment plan.
Good luck I am praying for the right decision to come.
Posts: 13 | From North Carolina | Registered: Jun 2014
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posted
Regarding your Dr with cyst busters...my son's doctor does Flagyl two weeks on/two weeks off. But I saw somebody post that Dr.H is pulsing on a 3 day schedule.
Who really knows what the right pulse is? It's all empirical at this point. Is it a proven fact that Lyme cysts open up only after 2 weeks of cyst busters, or is it after only 3 days?
Posts: 655 | From USA | Registered: Sep 2007
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
It's important to be DOING a cyst buster- -
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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posted
Regarding the lyme cysts, I was told by the new doctor I saw, that there is literature on the fact that lyme cysts take 2 weeks to open up. I would love to read the science behind that so when I next see him I will ask if he can direct me to that information.
All I know is that there seems to be two ways to treat cysts - to pulse three days a week, and to treat 2 weeks on and two weeks off. Some doctors only pulse 2 days a week.
Both doctors I have seen also believe that Mepron is a cyst buster even though it is not found in any literature. I was surprised to learn that another doctor held the same opinion.
Posts: 187 | From Connecticut | Registered: Jun 2013
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
And what's funny about me writing that above, I have to start my dd on one, and she's doing so well, I don't want to...
jokes on me I guess. But I will start her on a sliver, literally, 1 day on a weekend.
I personally built up to 2 weeks on/ 2 weeks off of Tindamax while doing Bicillin shots. It took me 2-3 attempts to make it a full 2 weeks on, because of herxing.
That was okay with my LLMD, he just said make sure same number of days off as on.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
Also grapefruit seed extract (GSE) is considered a cyst buster.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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posted
I found this information on drugbank.ca about tindamax and its half life.
"Elimination half-life is 13.2 ± 1.4 hours. Plasma half-life is 12 to 14 hours."
Posts: 187 | From Connecticut | Registered: Jun 2013
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
Docs do not always agree because there is no one treatment that works for everyone. So they are experimenting.
I have always understood that IV works a lot better than orals, so one might suppose that the same dose in both situations might be understandable. I don't say effective. However, I am a bit puzzled that you don't feel you improved with all the treatment but then say that you relapsed off the meds. This seems contradictory.
In my opinion, expecting sympathy from a doc under the current circumstance is probably asking too much, and a counselor might be a better person to help with your coping issues. Docs hear these sad stories every day and can't do much about them. Counselors, on the other hand, might actually be able to help. So, it is a matter of giving the right tasks to the right people. I hope you do get help with the medical as well as non-medical issues.
Posts: 2888 | From USA | Registered: Mar 2004
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posted
Poppy, I had about a 40% improvement on oral antibiotics before going on IV. Then went I went on IV, I plateaued and pretty much stayed the same for 18 months living with the same symptoms that I was left with after the orals.
When I went off the IV, I developed even more symptoms than when I first started oral antibiotics. So I think what was happening was that the IV was like a dam wall, holding back symptoms but not getting rid of them, and when it was removed, even more symptoms came back.
I guess you are right about getting not looking for sympathy from a doctor. They are overwhelmed with very sick people and probably have to keep very strong boundaries so they are not personally affected by their patients.
I do go and see a counselor, but I guess I really wanted more understanding from my doctor that I wasn't getting well, and was hoping he would understand how frustrating that was for me.
Some doctors are definitely better than others at getting the emotional piece of illness, but mine is less so.
Posts: 187 | From Connecticut | Registered: Jun 2013
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
Ocean...i didnt read all the posts
I stayed away from this post cuz i knew i would get emotional about it
I was undx for 15 years(a long time ago) in 94 i was desperate to help my 10 yo dsughter who i had infected in womb and breast milk
I got her dx and txed with one of first llmds and igenex. Once she was doing ok same doc dx me
The tx he gave me for a year was wrong dosages...but this was wy back when a few brave docs were trying to help us
After that year i switched to another llmd and he gave me better doses...but never flagyl or tini
I got a lot better but then worse and new doc gave me flagyl and rufampin
I improved but am.not cured - probably never will be
I dont think anyone should blame the patient...we are sick and part of the illnrss is cognitive issues...thats why we go to docs ... lmds But one of the problems when anything is new ie lyme tx...there are bumps along the way
I was upset when it happenef to me but knew stress and negativity is really bad for healing so i let it go and moved forward with healing with new llmds and new info and support
Its frustrating but true that all llmds arent created equal and some are not lyme litetate
Its a problem...its being worked on...i hope you can move on
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
LP, thanks for your feedback. I am sorry you have been through so much yourself.
Fortunately I am the kind of person who is able to let go of stuff easily. I have my rant, and then I move on.
In a way, its so good to know what the problem actually was because now I can do things differently.
The silver lining is that there is still hope to get better and any hope is good to have!
Posts: 187 | From Connecticut | Registered: Jun 2013
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
A few other thoughts on the situation.
This disease complex and its repercussions are so all encompassing that it would be hard for any one doctor to do it all. My experience is that each doc I have seen has added something that helped. Sometimes it is a matter of trying to figure out what you need next and then finding the right doc to do it.
Also, when I started out, I thought that if I was not cured, the treatment was not working. Then realized that getting better and staying functional was a more appropriate goal at least for me. Others may get cured, I have not and doubt it is possible in some cases. Not in yours, I hope.
Posts: 2888 | From USA | Registered: Mar 2004
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